Category Archives: being sick

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I’ve just made it home. My suitcase is still lying in the center of the kitchen floor.

It’s crazy how good home feels after you’ve been away from it, even when you’ve completely enjoyed your time away. Somewhere between waiting in line barefoot among rookie fliers who somehow forgot about the jug of water in their carry-on and the captain shouting God knows what into that fuzzy speaker, I start to feel my humanity slip like some kind of sock with lazy elastic hovering at the ankle.

Once upon a time, flying made me feel like a celebrity. The whole experience was a novelty and a privilege. And somewhere in my jaded depths I know that it still is. The mere idea of humans taking flight on a bus in mid-air is still mesmerizing and I’m lucky to have access to it. And yet somehow, the only celebrity I ever feel like is Ben Stiller in Meet the Parents. I’m all eye rolls and discouraged sighs, which sometimes emerge as a laugh–the kind of laugh you let out when nothing is actually funny. I try to keep my moans of discontent in, even when the automatic toilet flushes while I’m still on it and I’m sprinkled with fresh public toilet water. I try to breathe through the frustration of then not getting that same toilet to flush when I actually want it to and there I am dancing like some kind of monkey on fire trying to activate the motion detector that says just wave your hand to activate. It lies. I exit, I don’t care. I hate the toilet now. All I want to do is wash the Ebola off my hands and possible STD’s off my thighs, but the faucet requires the motion. And the soap requires a motion. And the dryer requires a motion.And what happened to handles? If I went on Shark Tank I’d reintroduce handles to public bathrooms. Anyway there is more dancing. More erratic behavior from inanimate objects. More laughing when it’s not funny. It’s like the DMV in there; the threat level of a Stage 5 freakout is just one toilet flush away in any given stall. You can sense it.

But not everyone confronts the airport bathroom circus. The old lady next to me doesn’t seem to have problems with her soap. I bet she’s been spared from the toilet water too. What is your secret, old white lady in the brown velour pant suit? What am I doing wrong? But there’s no time for philosophizing, I have to get to my gate. Guess where my gate is? Guess if it’s nearby or at the very far edge of the airport as in it has a separate zip code and everything. Guess.

Is it the tragedy that is modern American air travel that makes home feel this good? Maybe. Probably. I guess this account of flying would suggest I’m a young, old curmudgeon who has lost sight to how lucky I am. But it’s always temporary. I am either going somewhere great or coming home to relief and love, and it’s just the in-between antics that can get a girl down. Once home nobody shouts the temperature and the toilets flush WHEN YOU WANT THEM TO. Of course, an 80 pound furry beast running around you in circles then through your legs and back, shoving every toy in the box in your lap and wagging his tail with enough vigor to knock over small children and feeble adults, well, that helps too. That’s the best.

I celebrated Thanksgiving with my best friend big brother Nick and Company in Miami for a week. Mostly I felt like death, but I was excited to go and the change in scenery did me good. It’s been a rocky few months. My health declined from mediocre to poor without discernible reason, and that’s just the name of the game with illness like this. I can’t pretend I’m not discouraged by it or tired of feeling really shitty when I didn’t overdo it or change anything, as if a person deserves bad health anyway, but I’m trying not to wallow in it either. I saw the specialist in Miami and there are a few changes we are making, but we won’t know more until the results arrive from the copious amount of blood I gave to test. Aside from that, my progressive boyfriend and I broke up. Ew, breakups.

It’s interesting that a decision you’re sure of it’s the right one to make can be just as painful as the wrong ones you’ve made when you didn’t know any better. And by interesting I mean shitty. We did the adult thing and “called it” at the appropriate time. We saved ourselves the tragedy of letting it slowly burn and die until it ended in hatred. I guess ultimately, even an amicable breakup is still a breakup. It’s an end. You grieve for them and you grieve for who you were with them. I experienced a whole new pain this time around that stemmed from not being my whole self in the endeavor. I pretended and concealed when the truth was ugly or getting a less than desirable response. I don’t think Id ever done that In a relationship before, but I’ve never been under the circumstances I am now and had to introduce someone knew to a world that took so much explaining, and defending in some cases.

It’s weird, I actually wanted to keep my illness out of the whole thing. (I wanted to live in Neverland, is how that sentence should read.) I had this fear it would interfere with things before they ever had a shot to develop. I feared it would be difficult and unbecoming; It would suggest I was someone inferior. I was even afraid it might be the demise of the relationship. And then, it kind of was. The weight of it became too heavy, it’s unrelenting nature became too repetitive and it’s lack of a solution wore out the seams and we broke. There were other reasons, of course. But my being sick was up there, it messed with things, it was a big a part of the end. And for a while that was a really crushing thought. It made me feel small, made my life feel lesser. I push and work to live my life in spite of this invisible force trying to take it away, and yet sometimes, it still comes out on top. It wins.

But hiding it was like doing a monkey dance in a cramped bathroom stall. (Kind of) It was stupid on top of exhausting, and I don’t know how I expected anything authentically good to emerge when I wasn’t being true to myself. I am not my illness, I know that. But it’s there, it’s changed virtually everything in my life the last four years, and nothing good has ever come from denying or dismissing it; from pretending it’s not there. And yet, sometimes I can sense that people want me to pretend it’s not there. They want to hear that I’m better, and no one understands that fantasy more than me. But pretending makes me feel like I have to hide a part of my life that I can’t control, and that’s not a healthy place to be. I don’t want long conversations about my illness. Ive had enough of them for 20 lifetimes. But I do need an honest atmosphere that doesn’t require apology. I need to be able to be sick when I’m sick and well when I’m well and not judged inbetween. It will always take patience, compassion and effort in order for my life to be understood and loved from the outside. It will always be hard in my relationships. But hopefully if I am really seen, my external circumstances won’t take up so much space. And that was half the problem, I never really felt seen. Instead I felt sorry, and that’s because I betrayed myself. By not putting it all out there, I made it nearly impossible for my life to make sense. I am not jobless and living in my parents pool house writing on a blog called Twenty Five Pills a Day because of lifestyle choices. And that’s an attitude I confront a lot. I’ll work like hell my whole life to turn lemons into lemonade, but I didn’t pick the lemons, so I don’t think I need to apologize for that anymore. The weird thing is that in glossing over and skirting around this small part of me, so much more of who I am was stifled. Good parts! Fun parts! It doesn’t feel good not to bring your whole self to a party. In fact, that hurt the worst, and I did it to myself. I had a need that wasn’t getting met, and instead of accepting that once I knew it was true, I tried to do away with the need. Surprise surprise, that didn’t work. It’s OK to have needs. Love enjoys needs.

Now I am Stella getting my groove back. I see my health in the distance: a ship in flames slowly sinking into the ocean. Haha. That image makes me laugh. But this will pass. I’ll get better. Or I’ll get worse, then I’ll get better. It doesn’t matter, because I’m going to keep trying. I’ll attempt to transform all of this– pain, pleasure, toilet water– into something useful. Something fun. Because despair is boring and I’m seeking a creative life. The world doesn’t need more sad stories so I will find the good ones. I’ll trust what I’ve been given and let it fuel all my endeavors. Mostly I’ll breathe easier because I am who I am and I’ve made it home. I’m back. And I have so much to do.

I’m never up at this hour. But at roughly 6:40 am as I drove across Lake Ponchartrain, one of only a few lonely cars on the 24 mile bridge, it struck me just how sacred the early mornings are. Of course over water, there are no distinct markers of distance traveled besides mile markers on land, but somehow over uninterrupted waves there were these distinct and momentary glimpses into the context of my life where all the working pieces fit together. The sense, however fleeting, had me second guessing my entire history as a bona-fide night person. Maybe there’s something to these early morning hours where people are drifting into the routine of their day or into the hangover of their night, and in the middle is me, not exactly doing either, but finding my place still–stumbling on a whole in lieu of constant and incompatible parts.

Yesterday I attended JazzFest and I remember walking around in no known direction, attempting to find a group of my friends, which is almost a miracle if achieved in such a clusterfuck of a public arena, and this thought kept trying to get a hold of me. “What am I doing? I have no business being here.” Over and over that thought, with every wrong turn and mistaken identity. What a sad thought! I couldn’t pinpoint the origin of it, but it probably had roots in my mostly confined and solitary past over a few years. And now sticking my head out, landing clumsily in the middle of the public world that not only didn’t stop while I was “out sick”, it also didn’t slow down at all either. And that continued, irreverent, incessant flow of time in one direction only all of the sudden felt very real and a little unnerving too. But I walked on. It’d be a lie to say I felt any confidence at all then, taking in every type of person of every age and origin.And even though none of them looked truly happy to me, none of them had a life that I felt cheated by not having, I was still odd man out. I started to wonder if I had real friends at all that I’d find. Maybe I had imagined them up in a fantasy of my mind, and I’d walk tirelessly never bumping into them because there was no them to bump into. But I walked on. I pretended some of those thoughts didn’t exist. Maybe more, I just didn’t take them very seriously. I’d feel the sun burning my shoulders and I’d affirm that more likely than not I’d find my friends, I’d engage in young adult behavior, and feel a little better about my place in reality.

After 45 minutes of circles and flags and strangers, I watched a really drunk boy hoisted up by his friends, being dragged with his lifeless converse trailing under him leaving shallow lines in the dirt, the unfamiliar sights were piling up, and even I started to feel like a stranger there. But then– something familiar. Emily’s ponytail. Someone. People. Friends. They existed, and I was not yet proven insane. In that moment those thoughts I had didn’t carry any weight at all. Whether I found my friends or not had nothing to do with belonging in all honesty. Separateness is just a construct of ego and I know that, but it can stab you anyway. I knew that afternoon I could’ve really used some friends. And there they were and there I was. I belonged. I knew those thoughts were shit. Time to keep on living. Time to have fun now. Time to participate in the onward direction of time, and attach to some other thought that experience will most likely prove wrong.

Maybe I should’ve mentioned it earlier, but I’ve never really been a live music person. Which makes me feel incredibly lame mostly. Just like I’m also not really into The Lord of the Rings. True “outsider” feelings emerge in me when this is brought up in public, and I feel like there’s some joke I’m just not getting. What is there to say about it? To each his own. Anyway, at every live music event I’ve attended, I find myself gazing off lost in observational mode of the people enjoying the music, instead of intrinsically enjoying the music myself. I can’t help it. There’s always some woman on the borderline of being “too old to be there” on some drug that’s a little too young for her to be doing, and I can’t help but watch her, dance carelessly, body parts hanging out, not giving a shit about what etiquette she’s breaking. Then I at once sympathize for her but also want to be her, because she is losing herself in something enjoyable, and she’s alone, and I’m the creeper at the concert not dancing but staring wide-eyed and blinking very slowly. I dated one of those music junkie type of guys for two years. He had an impressive collection of bands that you never heard of on his ipod and was always discovering music years before it became popular. (I on the other hand got my music from Apple Product commercials) He flew all over the country to catch his favorite bands at different venues. Sometimes with friends and sometimes alone and it was this small gap between us because this passion he fell off his seat for was somewhere that I just didn’t fit. And this schism in us always interested me, because at concerts we’d share a joint and then even more I’d separate from the setting and lose myself in the detach-and-detect humanity mode. He was good about keeping me down to earth and assuring me that dancing like an idiot was fine and encouraged, and that no, that guy next to me was not about to die from sensory overload regardless of what his face and body movements suggested. But there was always some wall with me at those shindigs. I could never really figure it out. Ultimately the relationship ended, and I wondered how much, if any, this disconnect had to do with it. Maybe nothing at all. Maybe a whole lot.

It’s funny how discovering clarity leaves with you so much to know still. My goal this year has been to find clarity of any kind, certainty of any measure. Because both of these things lack hugely in my personal life and it wares on me daily. It’d be nice to make a decision and know it to be right, or know anything at all for that matter and trust it to be true. But even with this goal in the forefront of my consciousness, it has still been incredibly hard, and so far, I’m yet to find either. I’m guessing the more things I pursue where the end is uncertain and there are no guarantees will help me to eventually get there, or in the general ball park. On the bridge this morning, the unceasing rhythm of a road bump every 1.5 seconds, I glimpsed certainty. I glimpsed knowing something at all, and it felt very good. But I don’t know if it’s possible to exist in this dimension full-time. At least half of life seems to rely on not knowing but jumping off anyway. Maybe love, happiness, success, peace..are all the outcomes of great risk and great faith. All anyone can do is make their best bet and go for it. Maybe once we let go of knowing anything for sure, the way I walked in endless circles yesterday, the way those waves went in no direction this morning, is how we find the happy end, whether we knew we would or could or not.